okay. i'll see you in just a few minutes, right? >> she's outside an operating room in palo alto, california. this is the moment of no return. no backing out now. and she is terrified. her name is lindsey lou bingham. she is 9 years old. >> a group hug. >> love you. you can do this. you can do this. it's okay. >> she says good-bye to her mother and her father. without this operation to give her a new heart, lindsay will die. with it, well, who knows who what will happen. >> love you lindsay lou. >> what is happening to the

bingham family, jason and stacy and their five children is something like out of "ripley's believe it or not." it is also for all of them, an intensely personal and terrifying oterrify ing odyssey. they will allow us to be here as witnesses. >> hi, guys. >> we'll even record some of the journeys themselves. their defenses as you will see are exceptional courage, unshakeable family bond and an an abiding desire to go home. once it was all so very ordinary. here they were a couple kids off to college in utah who happen to meet one day at church. >> at first she didn't think i was all that fancy. she learned to love me. >> they had no idea, of course, what would be asked of them. when they got married on a fine june day back in 1997 and moved

to the oregon countryside. the very town where jason was raised and started a family of their own. >> how old are you? >> five. >> what do you have on your birthday plate? >> a candle and fire. >> as we've had each one, healthy babies. they go through their childhood. they have worries and concerns if they get bit by a dog or a broken arm or something, but nothing with this magnitude. >> haines is a speck in a grand sweeping landscape. town of 400 or so near the oregon/idaho border. here jason joined his father's accounting business. stacy went to work at a nearby hospital as an obstetric nurse. this is the home the binghams loved and where they imagined they would live for the rest of their lives.

>> it took each one of them to make us a family. sierra is compassionate and loving and you have megan who is confident and athletic. and lindsey has been our little bossy jabber jaws. makes sure everyone stays in line and hunter is just a happy go lucky 5 year old. full of energy and life. and then gauge who is kind of the family clown. >> we love him. >> it certainly was in may 2012. tax season was behind accountant jason and the kids would soon be out of school for the summer. that's when lindsey began to complain about stomach aches. her doctor thought it might be constipation or asthma acting up but then she got worse. her face and belly swelled. she had trouble breathing. so jason and stacy took her to the hospital where stacy worked in nearby baker city. >> we took her into the e.r. and said can you do a chest x-ray

just because, you know, she's having this difficulty breathing and all of the swelling. we're sitting there waiting. please, please, please, have a normal chest x-ray. please have a normal chest x-ray. we'll take anything. we'll try our hand at something else. i don't want to go down that road again. >> did he say down that road again? >> the doctor walked back in. >> he said tell me more about sierra. >> sierra, yes. sierra is the binghams first born and they descended into a terrifying place. a place they knew too well. >> no family would having it through what we went through with sierra again. >> the incredible terrible journey that began here at the country paradise the binghams loved so well did not start with lindsay's stomach ache. it was six years before that. may 2006.

the binghams had three children back then. stacy was pregnant with number four and 6-year-old sierra was at a t-ball game in town across the fields there. she threw up at the game and kept throwing up at school for the next few days. said she felt cold and tired all the time so the binghams took her to the doctor who gave her a chest x-ray. >> the doctor comes in and says one of three things here. it could be a pneumonia. a form of cancer. or something called card cardiomiopathy. >> they told them to take sierra to a cardiologist. >> you hear him make a few phone calls. he was talking about this kid. another kid that was super sick and will need to go to intensive care. we thought that kid was really sick. glad that's not us.

>> and then the technician came back and they understood. >> that kid was ours. >> they rushed sierra to intensive care. the diagnosis, dilated cardiomiopathy. heart failure. >> you're in a misty fog like your world came crashing around you and then just trying to put your mind around it and grasp it. fear. >> sierra was hospitalized for two rocky weeks and then sent home with medications the doctors hoped would help her but she only got worse. >> i remember asking her to come help plant some flowers that would be coming back every year so if something did happen i would have some kind of memory of her. she was too tired or too weak to do it. >> five days after the fourth of july, sierra was life flighted

to the stanford campus in palo alto, california, where doctors gave stacy and jason the news. without an almost immediate heart transplant, 6-year-old sierra would die. >> it was horrible. when we say it was a nightmare. it was the worst time of our life. bar none it was the worst three weeks of my life. >> the wait for a donor heart can be months. time sierra didn't have. unless an experimental child sized heart pump could be flown in from berlin, germany. >> it would take five days to get here which we knew she wouldn't make the five days. to say there's a time when you've shed every tear you can shed and go home that time completely exhausted physically, emotionally, we hit that point. >> we called as many people as we could and asked, please pray for our little child tonight.

1:30 in the morning we get a phone call. i thought that's it. >> but jason was wrong. that wasn't it. the unbelievable journey and the test of them as parents had just begun. >> coming up, two children in need of two hearts. >> usually you want to hold it together for your kid. i couldn't control my emotions. >> what about their other children? another dose of difficult news for stacy and jason bingham. >> it was our d-day, i think. could save you fifteen percent or more on car insurance. yep, everybody knows that. well, did you know some owls aren't that wise? don't forget i'm having brunch with meghan tomorrow. who? meghan, my coworker. who? seriously? you've met her like three times.

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it was 1:30 in the morning. their daughter sierra struggling for life in the icu. jason and stacy bingham rouse from restless half sleep dove to answering the telephone. >> we thought it was for the worst. the doctors called and said we have a heart available for sierra. i was, like, are you serious? >> the next afternoon sierra received a donor heart. it had belonged to a 2-year-old boy. in the world of heart transplants, size matters more than age. sierra's new heart would grow as she did. >> i think when it came, we knew everything was going to be fine. there was just never, ever any

doubt. >> but it wasn't easy. there were months of recovery. and then the regular invasive and often painful monitoring against the possibility her new heart would be rejected. a threat she would always face. though barring rejection, sierra's life should be normal. but the binghams wondered why? why did sierra's own heart fail? did she need to worry about their other kids? not to mention the ones they still hoped to have. at the time the doctors assured them no. neither jason nor stacy nor anyone in their family tree had the disease. >> all megan and lindsey that were younger at the time had echocardiograms done to make sure there was no signs of enlargement of the heart or anything and then both hunter and gage after they were born we had them do echos as well for my piece of mind. they all came out normal. we thought, good. rule that out. that's not an issue then.

>> and so when six years after sierra's transplant lindsey complained of a tommy achummy a. >> we were both in denial. >> that's when they took lindsey to that emergency room in baker city and the doctor asked them to tell him more about sierra. >> she had dilated cardiomyopathy. he said she had the same thing. i remember just sobbing. she said i don't want a transplant is the first thing lindsey said. >> my tummy doesn't hurt anymore. it's okay. she could see the fear in us. i felt bad that she saw it. >> you stopped letting her see it. >> that was the last time she saw it. >> the next day lindsey was flown here in palo alto,

california. the very same place they brought sierra for her heart transplant six years earlier. now it was impossible not to think there was some genetic link involving their daughter's heart disease so jason brought the rest of the children here too for tests. >> is it going to hurt? >> it was on june 8th, a friday, our d-day i think. we sat down and were told that of five children, all of them either had cardiomyopathy or had flaggers or symptoms that they watch that can turn into a cardiomyopathy. >> the cardiologist dr. daniel bernstein was as astonished as they were. even though echocardiograms years earlier looked normal, now all of the bingham children, every single one would be confronted with a distinct possibility of one day requiring a heart transplant just to stay alive. because of that deadly condition many people have never heard of.

dilated cardiomyopathy. >> a dozen years ago, we used the word ido pathic which means unknown cause but i think it really means we don't know yet. >> genetic testing is a rapidly developing science but even now it cannot tell the binghams why. why their children have heart disease or where it came from. >> there were standard tests that can be done in 50% of the cases we don't find anything. that doesn't mean there isn't a genetic cause. it just means that we haven't yet identified that gene. >> jason and stacy were devastated. it was not a fluke that one child needed a heart transplant. not near coincidence that a second was now facing one. and in fact it was about to get even worse. jason and stacy noticed there was something not quite right about gage. >> coming up -- >> they said he's in complete heart block.

we need to admit him. >> here they go again when thre

months but doctors warn the d g binghams it could be much longer so jason took the other four kids home to haines to keep life as possible while they waited. it wasn't normal and it didn't last. a week and a half after going on the transplant list, lindsey's heart could no longer sustain her. she needed the berlin heart right away.

jason flew back to palo alto. >> he happened to bring gage with him. >> he wasn't acting right. >> stacy checked his blood pressure and a pulse. they were incredibly we. they took him to the hospital. >> they said he's in complete heart block. we need to admit him. >> at the age of three, gage urgently needed a pacemaker. so now there were three. gage received his pacemaker and quickly rallies. here you can see the signs of the surgery lindsey had to implai implant her berlin heart pump. this device that circulates her blood that connects through her abdomen through her heart. this massive cart rolls alongside lindsey wherever she goes. >> my berlin pump and it goes up into here and it goes and connects to my heart and this pump is the air and this machine

helps me and if it got turned off, they would hook me up to a thing here. a hand pump. >> so what else are we going to do now? >> wait until a heart comes, right? >> let's take a look. lie back. >> now the wait for a heart has an added urgency. how long could the heart pump hold out. hard to know. it flew off blood clots which kept everyone watching tense, on edge. the rest of the family moved into ronald mcdonald's house in stanford. two bedrooms for all of them. lindsey's siblings enrolled in city schools. a world away from anything he had had ever known. >> my class and grade was 28 kids and so now my grade is 200 kids. >> but sierra had been where

lindsey was and in visits to the hospital offered advice about endless needles and biopsies and daily terrors of her new life. >> i was really scared so i asked sierra what it was really like to have a heart. >> what did she tell you? >> she told me it was kind of scary at first but then you're fine. >> her siblings worked to build her up. >> go lindsey! >> and as jason and stacy waited, mired in bad luck, a remarkable likeness seemed to carry them through their long draining days. their terrifying nights. they did not complain. they remained upbeat for the kids and taught them the meaning of gratitude for what they have been given. did they understand where their hearts come from? >> yes, they do. sierra's we wrote a letter to the family as soon as we

received the heart transplant. we can't imagine it really is a two-edge sword when they receive that because you know what it meant. as much as we love our child and want them to live, i can't imagine the grief they have to deal with because they actually had to lose theirs. >> they received a letter back from the grandmother of the 2-year-old boy whose heart now beats in sierra's chest. >> eternally grateful to his mother and his grandmother that wrote the letter and the sacrifice that she made to allow sierra to live. >> just as you'll be eternally grateful to some other family. >> right now i pray for that family out there. someone out there in the western united states has a child that's going to save our life. >> there was of course no way to know if or when there would be a heart for lindsey. jason and stacy were keenly aware that some 50 children die each year waiting for one. in fact, this is why they let us

witness their personal drama to help the world understand the desperate need for donors. and here as they waited two months passed and then three. jason's beard grew longer. seasons changed. back in little haines, oregon, people understood that all of this cost money. lots of money. the binghams have insurance but it doesn't cover the very expensive multiple medications the kids will need every day for the rest of their lives. tens of thousands of dollars a year. and so the people of haines put on an auction. they raised nearly $75,000. >> one. two. three. >> and still they waited. occasionally jason went home to help with the family cattle drive or pick up clothes for the kids who are now outgrowing them. >> it's a lonely place to be here.

i don't know how we're going to continue to live here. we want to live here so bad. >> today is labor day so we thought we would give lindsey a chance to labor. >> of course they couldn't go home. they celebrated halloween in the hospital. then thanksgiving. six months passed. >> our new quote is that we're one day closer. >> how is that berlin heart of hers working? >> it's doing well good. >> this berlin allowed her to feel healthy enough that she's the regular 8-year-old girl. she wants to skip and jump and play and it's a false sense the security because you forget she is still on a heart device that is keeping her heart pumping. >> what are you looking forward to then? >> getting a new heart. >> and then? >> go home. >> but for now christmas was

coming. the nurses claim they had seen santa sneaking through the hospital. >> he kind of walks in secretly and then he goes out fast. >> jason and stacy brought an artificial tree into lindsey's room. she put on the finishing touch. her beads of courage each bead representing a needle poke. a day in the hospital or a procedure she has endured. but christmas came and went. the wait was becoming unbearably long. >> i can't go outside when it's raining or snowing. it's hard to stay in here when i can't -- >> valentine's day approached. they had been waiting nearly eight months now. and then at 6:00 p.m. on february 12th, the doctor pulled stacy out of lindsey's room for a chat. something to tell her. she refused to tell the kids what she was told. >> i know the secret now.

>> she thinks she knows. she doesn't know anything. >> then stacy called jason and waited in lindsey's room for him to arrive. he passed the nursing station alive with excitement. >> she doesn't know yet. >> guess what? >> i knew it! >> guess what? you got to guess. look in the window over there. >> you have a heart! yeah! >> so she did though what was coming next was, well, who could predict such a thing.

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>> this has to be a dream. i'm, like, wake up, lindsey. wake up. it's not. >> lindsey lou bingham has been waiting for a new heart for 239 days and now finally they have found a match.

the doctors scheduled surgery the next afternoon. >> i'm just scared a little. pretty scared. going to be coming up my chest and then taking out a heart and putting another one in. >> who knows why things happen this way. as 9-year-old lindsey tries to tamp down her fear, stacy struggles to hide a new one of her own as she tells jason she just heard something about sierra. sierra, who pure coincidence, just undergone the same day a routine biopsy. jason has a hard time hiding his fear from lindsey sitting just a few feet away. >> she's actually going to be admitted to the icu. she had a biopsy today and her pressures are high in her heart so they're going to admit her to monitor so she could very well be there when lindsey comes out. >> jason and stacy go to the

cardiovascular intensive care unit to learn more about what's going on with sierra. nearly seven years after her heart transplant, her biopsy is showing that her body is rejecting her donor heart. >> the measurements were significantly higher than her last time and we need to find out why. >> jason and stacy try to put a positive spin on the news when they tell sierra. >> and so they want to put you in the unit so when they get your biopsy results back in the afternoon is it rejection or something else. lindsey is going in for a transplant and you're in the best place you can be right now. >> and they caught it. >> one day we'll look back at this and laugh our heads off. >> the binghams knew exactly how serious rejection can be. if treatment doesn't work, it could mean sierra will go back on the transplant list. >> i'm sick to my stomach i'll be honest. feel like someone hit me in the gut.

it's hard to see sierra going into the icu. i didn't expect it. i didn't see it coming. >> so mind and turmoil, heart pulled in two directions. jason returns to lindsey's room where he and one of lindsey's nurses try to keep her upbeat before surgery. >> ready, set, go. but hours pass and the surgery is delayed and delayed. >> we have more delays with the donor. they're still trying to place another organ. >> other organ donors they are trying to locate are taking more time. >> ours is not going to go away. there is always a small outside chance that the heart goes bad for whatever reason. >> that was my question. >> that risk is still there. >> the timing of the operation

keeps changing. lindsey has been standing by for a whole day and night now. she's exhausted growing more and more anxious. >> i just want to get it all over with. just get the whole thing over. >> and then quite suddenly it's upon them. lindsey learns she'll get her new heart in the first hours of valentine's day. >> valentine's day. >> happy valentine's. >> and then finally 30 hours after they learned about the donor heart, it's time to go. >> crank it all of the way up. you earned this one. >> lindsey chooses her own soundtrack for her walk to the operating room. "somebody to love." >> got chills right now. seeing her perk up is everything i needed. let's put this thing around you like you mean it. >> with her baby blanket

transformed into a superhero cape, she's ready to face the scariest event of her young life. jason works to keep lindsey's fear at bay. >> welcome to the elevator. >> this is where i get the biggest hug in the world, okay. i'll see you in just a few minutes, right? >> right. >> tell me what happens in a few minutes. you just go to sleep and then you wake right up. >> and then i get better. >> yep. >> love you, lindsey lou. >> but unimaginable as it seems, lindsey's heart transplant operation is just one crisis in a long night. >> let's go check sierra first. let's check on sierra first. >> coming up -- it's really hard. you want to be happy for the one but you are feeling so bad and want to cry for the other one. >> two daughters' lives on the line. precision inside the operating

room and emotion outside. >> unbelievable. >> when "dateline" continues.

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>> from the time the heart is taken out until it gets profused with blood again from lindsey has to be kept as short as possible. we're talking a maximum of six hours. i rather keep it a lot shorter than that. >> the team has gone to the hospital where the donor is to retrieve the heart. >> the heart looks really good. lindsey's chest is open right now. she's a go. >> 4:50 a.m. doctors put lindsey on a heart/lung machine and begin to remove her diseased heart. it is badly scarred and twice the size it should be. as they're finishing, a call to the operating room. >> they're going to be here in 15 minutes. >> 6:00 a.m., jason and stacy aren't prepared for emotions they feel as they see the donor heart arrive. >> reality of it really sunk in when we saw that cooler. this is a human heart. to see the nurse head down the hallway to my little princess is

opened up and waiting for it. >> the passing of life from one child to another. the heart looks perfect. implantation begins. meticulously surgeons stitch together five separate connections. they begin with the new heart outside of lindsey's body and then finish up once it is slipped inside the chest. the heart has not beaten since it was taken from the donor nearly four hours earlier. the next step is crucial. the team will use a defibrila defibrillator to spark lindsey's new heart back to life. immediately it begins to pump and soon finds its rhythm. >> it took a couple hours longer than i expected. everything went very, very smoothly. >> after nearly eight months of waiting and hoping, lindsey has

her new heart. the binghams have two daughters in the cardiovascular icu now and as they get good news about lindsey, their blood pressure spikes over sierra. >> i would like to regroup with the whole team and talk over things and see if we can come up with a more effective long-term strategy for her. >> i need to hear you say you have options. >> i've always been honest with you. this is not the easiest thing to treat. there are times in the past where we haven't been able to get it under control. >> sierra's biopsy results show antibodies are attacking her heart and have already caused damage. doctors tell the binghams they'll try a procedure in which they try to remove harmful antibodies from her heart. it sometimes work and it sometimes doesn't. in order to survive, sierra may need a second heart transplant. >> it's never going to be the

same. there's always going to be something. now that always something is going to be times two. it's really hard. you just feel like your emotions are on a roller coaster and you want to be happy for the one but you're feeling so bad and want to cry with the other one. >> and of course there is little gage who has the same heart disease and already a pacemaker at age 4. jason and stacy do their own form of triage focusing on the sickest child. for now, that is lindsey. >> we're all here now. megan is here. so is gauge. >> the days after a heart transplant are critical. lindsey suffers a seizure and put on a ventilator after a bad reaction to medication. the doctors diagnose the problems quickly and soon she's up and walking without an artificial heart pump for the first time in eight months. >> all right. >> finally well enough to get rid of that beard jason started

growing the day that lindsey went on the heart transplant list eight months earlier. >> do it! >> way to go. >> two weeks after getting her new heart, lindsey is ready to leave the hospital. >> are you ready to go? >> oh yeah. >> she's out of here. >> she didn't go far. just down the treat to ronald mcdonald house until lindsey and sierra are clear for the trip they want. the one back home. until then, all they can do is wait. >> we don't know what's coming. >> what's coming won't be long. >> no way to know is it going to be good or is it going to be bad. each time you're just a little bit on pins and needles. let us get a good report. >> coming up, a setback for sierra. >> treatments were unsuccessful. >> and another wait begins. will the binghams ever make it home?

>> jason and stacy bingham, the ordeal seems endless. all five of their children have cardiomyopathy. two have already had heart transplants and a third will very likely need one. in the weeks after lindsey's transplant, her sister sierra goes through a course of treatment to try to fight her antibody reaction and on april 4th, seven weeks after the operation, and on the same day, both sisters return to the hospital for biopsies. if the results are good, jason and stacy are hoping to pack up their family and go home to oregon as soon as school lets out at the end of may. lindsey's heart is working beautifully. no sign of rejection. she'll soon be weaned off the steroids that are causing her face to swell.

but as the treatment for sierra's rejection worked? >> the pressures which were elevated are still elevated. it hasn't gotten better. >> sierra's heart pressures are the same as they were at the last biopsy. her coronary arteries have gotten smaller and both of those things are signs of heart disease. >> another punch in the gut. every once in a while the true reality of what we're going through sinks in. that was one of those moments. >> jason and stacy go to sierra. >> what this means is treatments were unsuccessful and so they're going to wait and see what the numbers are for the antibody rejection and then they'll meet together and make a plan. not yet. not yet. that light at the end of the tunnel is so close. it's just right there and then it's, like, the tunnel

collapsed. >> having failed to stop the rejection, doctors begin a different course of treatment. four more weeks go by. four uncertain weeks of waiting, hoping, hoping just to go home. >> just seeing it again. seeing my real actual bed and not sharing with anyone. >> and then sierra undergoes another biopsy to see if the new treatments have worked. >> have fun. >> we'll see you afterwards. >> jason and stacy have learned to lower their expectations not take anything for granted. this result could sink them again in their medical nightmare or set them free. they wheel sierra back to her room to wait. finally the biopsy results come in and. it worked! at least for now the rejection has stopped. sierra's heart is looking good. >> that means we really can go home. is that what i'm seeing here? >> i think so.

>> cardiologist daniel bernstein will make the call. >> things are going well. go home. enjoy being in your home and we'll see how things go over the next couple years. if things quiet down, no problems, then you're fine where you are. >> words of binghams wondered if they would ever hear again and in spite of all that they've been through, they are grateful. >> we walked away twice now with two children still alive. that's more than some parents can say that have to leave here. and we can go home with five children. >> and finally on the last day of may as clouds and rain yielded to brilliant sunshine, it seems like half the town gathered in the local school yard and welcomed the little family caravan with a huge surprise party. >> how are you? >> how are you? good to see you.

>> speeches were not required. >> i want to hug you again. >> so are you letting yourself feel like that's it, we're home, or do we quite go there? >> we got a new norm now. to think that it's over, no. it's just the beginning. we're okay. it's great. we've been truly blessed. and we're excited to be home. >> and finally here they are. sierra went straight to her bedroom just to see it. lindsey, jumped on the trampoline just one of the excited siblings and cousins now. just a regular kid again. >> i love sitting there and being able to watch my kids playing on the play structure and kind of watching them grow and play from afar. just watching them be kids.

>> it's not over. mit never be. but right now, it's just fine. >> that's all for now. i'm lester holt. thanks for joining us. very good monday morning to you. here's what's coming up on "early today." reaction around the country and the department of justice for the verdict in the george zimmerman case. reports this morning that edward snowden has very specific blueprints of now the national security agency does what they do. a major loss for high-speed motorcycle racing during an attempt to top 300 miles per hour. plus, an autopsy will be done today to determine the